A Little About Needles

Needles are scarey for all of us and really scarey for our small children who don't understand why they have to get "stuck" to feel better. It doesn't make much sense to them. Here they are bleeding and hurt and the one they trust the most (mommy or daddy) is holding them down while some stranger (the nurse or lab tech) is trying to inflict even more pain on them. And sometimes when they aren't successful they try and try again. Tension is high! Then, when the child looks to find comfort in their parents eyes; all they find is stress and more fear. What a teriffying experience for them. And what a heart wrentching experience for us too. We are made to protect our children. But what is a parent to do? Our child needs this medication in order to stop the bleeding and in some cases to save their life.

I am sure many of you can tell us story after horrifying story (I have numerous ones myself). But I want to encourage you with a few things. First of all: You are NOT a bad parent, you are trying to do what is best for your child. Do not listen to the uninformed, judgemental chatter of others who don't have a clue what hemophilia is. I know it is often hard to do, but it is a must if you are truly going to benefit your child. Second: Get informed, get educated, read, ask questions, you need to become your child's best advocate. Because no one knows your child like you do! And I also want to mention a wonderful, helpful product that you can use to help cut down on the stress and pain of needle sticks for your child. Actually there are two; one is called LMX and the other is EMLA. They are topical numbing creams. They help numb the skin above where you are going to stick a vein so the child does not initially feel the stick. You can talk to your HTC doctor about getting some or your Home Care company. The cream is not a cure all, but it sure does help with the pain involved.

Needles unfortantely are going to be a part of their lives...but whatever we can do to "make it better" will definately help.

Just learning to crawl

Hi, all you moms out there, we have a new mom that is worried about her baby learning to crawl, walk, run and so on. Lets give her some words of encouragement. How many of our children made it.
With my son I padded the inside of his pants for some extra cushion for his knees, now they make pants and socks like that
I also padded the fire place and traded my square glass top coffee table for a round wood one.
That is the only thing that I did, but I am sure some of you other moms have some good ideas for her. I will check back tomorrow. Have a good night ohh I made sure that his shoes fit well, so he would not stumble good night everyone

Leting your boys grow up

Today is going to be a long day

My son who is 13 years old, he will be 14 on the 27th of this month, went snowmobiling

His best friend has snowmobiles, he has gone before, but this time is different
they left yesterday at noon and camped out in a heating hut and are coming back today before dark

He infused to 100% of course before he left and will infuse today to 100% before he goes out today. He has factor, emergency releases, he is educated, he can self infuse as long as he is not to injured. His Friend and dad are 5 minute educated. head injury or internal injury call mom and head out of the mountains. Just in case you are wondering he has all the safely gear available not just a good helmet

He is going to be fine and so am I. I will let you know when he gets home

Some days are for memories

Today is my mom's 70th birthday, and we had a party.

Remember that we are people, moms, dads, sisters, brothers, sons, daughters, and friends first
second we have hemophilia.

Enjoy life

Success - A Normal Fun Day

Thanks, Rhonda for reminding us that we need to look at our daily lives and extract the successful moments. Too many times people and circumstances shout the negatives and failures at us. I want to take the time to look at the successes, and the positives no matter how small.

One such success came the other day when our family drove up to the mountains to the "snow." (Around here you actually have to drive 2 hours to find snow.) Busy packing snow gear, snacks and 6 kids into the van was hectic and I had forgotten to infuse my son that morning. We spent the day sledding and playing in the snow. Much to the delight of my children...as this was their first time sledding. A couple hours into it as I watched my son flying through the air after going over a jump...and realized I forgot the factor!!! My mind began to race: "What am I going to do if he has a bleed?" But after my panic...nothing happened. Nothing "bad" that is. We enjoyed the rest of the day sledding and drinking hot chocolate. And upon arriving home, a quick check revealed a couple of bruises but no bleeding. I call that a wonderful blessing and a success. My absentmindedness could have turned our day of fun into a real mess. But instead it was just a "normal" fun day!

2008 success stories

It is another year, it is the beginning of another success story
My son has his first day of Junior High Basketball if we make it through today, that will be my first success story of the year (not mentioning that his sister took him to get a Mom approved haircut and he came back with one)

What are you stories of success for 2007 or just the little ones that make the days normal in 2008

Happy New Year

Happy New Year

I would like to say Happy New Year to all the Hemophilia Moms and their families.

My family had a great 2007. We had limited medical problems and only a few of the normal kid sick days.

My son (Alex) and I traveled to the Annual meeting in Orlando and had a great time while making new friends and see old ones. With out trying we learned a lot while enjoying ourselves.
Alex and I also visited a private ranch in Virginia and had the most awesome time (to quote my son). We met other families with hemophilia as well as just having a wonderful time.

My daughter Kristin could not join us this year she is attending her sophomore year in college.
It is so hard to let go sometimes, but I am very proud of her. She is trying so hard to be a positive contribution to our community and she is being very successfull. She enjoyes being a camp counsler at hemophilia camps and also attending them as a camper. She is a carrier that also is diagnosed with mild hemophilia, so if any of you women have any questions for her I will pass them on.

looking forward to meeting some of you in Denver, Co at the next NHF meeting.

Have a safe evening and I hope to talk to you soon.

Happy Holiday's

Merry Christmas, and Happy Holidays to all

Reflection

As I sit here this morning and watch the snow falling ever so quietly, I remember the blizzard we had in December of 1978, the weekend my 3 month old son was diagnosed with severe hemophilia. Sitting in the intensive care unit, trying to absorb what we were being told, Todd's Dad and I struggled to acknowledge, accept and move forward - we were able to acknowledge, but the acceptance and moving forward came much later.

Thinking back I realize that was a pattern we followed throughout our lives. Each time we were confronted with something new there was the need to acknowledge, accept and move forward. For each, the time frame for that acknowledgment and acceptance in order that one could move forward,was different. For each, our coping mechanisms were different. But the basis for all remained consistent: we loved our sons and from that love grew a thirst for knowledge; with our knowledge we gained control; with that sense of control we lived normal lives in a not so normal world.

What is Important to You?

Had a chat with some of the other mom contributors to this site today. We all agreed that we want to make this blog the most beneficial to you. In order to do that we want to know “What is important to you?” We invite you to tell us what is on your mind, share a story, ask a question, voice a concern, or simply bounce an idea off of another mom. If you need information, encouragement, or support we want to be here for you. The moms on our team monitor this site daily. Although we will not be able to give you a real-time answer we will be able to respond within a day or so.

Everyone is invited and encouraged to post a comment on this blog. It is a very simple thing to do. If you would like to make a comment, ask a question or tell us anything on your mind, all you have to do is click on the word “comments” at the bottom of this post (or any post). That will bring up a screen with any previous comments on the left side. The right side of the screen will be a place for you to leave a comment. Just type in what you would like to say and click “publish your comment.” If you have a google account you can sign in so that your screen name will appear on the bottom of your comment or you can remain anonymous. (If you don’t have an account you can create a google account if you like.)

Your participation, input, questions, stories, concerns and needs are what this site is all about. It is why we are here! We want to help you, encourage you, and relate to you Mom to Mom.

Looking forward to chatting with all of you!

Happy Thanksgiving

I hope everyone had as great of a day that my family and I had. We enjoyed great food, good friends, many family members plus the new puppy we now have. I am not leaving town again any time soon. I was in Phoenix last week and when I came home our family had grown by one puppy.



We watched the Dallas football game, and I was able to inform everyone that the kids and I have played on that field as well. My first year at the NHF was in Dallas and we had an outing to the Dallas Foodball Stadium, it was a blast, we met players and cheerleaders as well as have a great nite of fun and freindship.



Enjoy everyday.

Family Time

Tomorrow is Thanksgiving, a time to be with our families. During these times is when i realize the most that my children are kids first. That with today's technology, and choices if you are outside looking in on my family, you would see just that a family. Do not let Hemophilia lead the way, you lead the way and have a great Holiday

The Gift of Being Thankful

During this week I have had an opportunity to be busy, frustrated, frazzled, late, and stressed. You would think I might be upset about it but believe it or not I am thankful. Thankful to be so busy with my children that at times I don't even have time to fix my hair (pony tails are in aren't they?). Thankful that I have an opportunity to be frustrated with fighting sibblings, who forget where they put their shoes. Thankful that I am frazzled because we have to get to music class, tennis lessons, get our science experiment done, then get home and cook dinner before rushing off to a meeting for work. Thankful that I have the opportunity to be late for a lunch appointment because a child had taken off with the van keys and we spent 15 minutes scouring the house before they were located upstairs in the bedroom. Thankful that even though the stress of "getting everything done" somedays is more than I can stand. Thankful! Yes, I am thankful.

When I think of the alternative...lots of free time, relaxation, always looking my best, never late, and always calm. This sounds really good but at a price that I am not willing to pay. If this were my life it would be terribly empty. Think about it. Being single was fun and we did what we wanted, when we wanted to. But what did we all desire? We all desired to be married and have a family. And it is those precious children that have pressed in on our time, but I wouldn't trade it for the world. My first born son introduced me into the world of hemophilia with quite a jolt. There was no family history. So we were completely surprized and well as terrified at the diagnosis. But looking back now I would not change a thing. Though I do not like to see my son suffer with his bleeds and infusions I would not give up the wonderful character development that having Hemophilia has provided. Nor would I give up the wonderful friends and families that I have met through this tough disorder. The Hemophilia community has allowed me to meet such great, committed and commpassionate people (like all of you) who have inspired me and uplifted me in times of dispair. We can choose to look at Hemophilia as a blessing or a curse. But before you call it a curse, evaluate all of what you have been given (friends, personal growth, support, education and experiences). I choose to look at living with Hemophilia as a blessing. and I hope you do too!

Have a great day and take time to be thankful!

Exect the Unexpected

While I was at NHF in Orlando meeting and chatting with all you wonderful moms, little did I know what was going on back home. My husband and children were home on the West Coast. Friday morning was Factor morning... however, you guessed it, my husband forgot or maybe was just hoping nothing would happen. My son has a port and dad has tried to access it but has never been successful in doing so. So fear or forgetfulness, whatever the case, brought a frightening evening for our family. Something that all of us sub-consciously fear. "What if I am not there when my son needs me?" I was about to live out this very fear.

After retiring for the night...about 11:45pm (8:45 pacific time) the phone call came. "Honey I am in a delima, Brock fell on his head and cannot get up, he is disoriented and screaming. I am not sure what to do." In sheer panic I sat up in my bed, now wide awake and tried to calmly ask "Did you give him his factor this morning?" When the dreaded "no" answer came so did the tears and near panic. I was 3000 miles from home and could do nothing...nothing that is but pray. I instructed my husband get out the supplies and start on the factor, and that I was going to make a call. You see we have 3 younger daughters who were home, scared and screaming as well which were only adding to my husband's stress and anxiety. I called a dear friend who was so kind as to drop everything and drive to my home. While on the phone with me she arrived at my house and asked what to do. I said, "knock on the door and if it is open go in, then gather the girls and get them out of the room." She guided them upstairs, put jammies on and began to read stories to them to distract and calm them down. What an angel. My next phone call was to the Associate Pastor and his wife who immediately prayed then also came to the house.

At this point my husband was not having success in accessing the port so he called me back and put me on speaker phone. He was stressed, frustrated, and just wanting to just take Brock to the emergency room. "You need to get his factor into him before you go." I said, "You really don't want them doing it if at all possible. He needs to be treated now." He agreed and tried again, and again with no success. With much anxiety and a not so nice tone of voice he was beginning to "lose it." With every bit of calmness I could muster I said "Babe, just take a deep breath and try again, just reposition the needle." Of course my heart was racing, and I was praying desperately in my mind for the Lord to guide his hands.......then....finally....success! He was able to get the factor flushed into the port! (This was the first time ever that he was successful!!!!) I cannot tell you what a relief that was! Then they were off to the emergency room for a CAT Scan to check if there was a fracture or any bleeding into the brain. Pastor accompanied them, for which I was truly thankful that my husband would not be "alone."

Brad, my husband, then said, "Just go to sleep and I will call you with the results." Sleep! Are you crazy? Crying and praying was all I could for the next 4 hours until the call back from my husband saying, "We are on our way home, the CAT Scan was normal, no bleeding or fracture." This was an absolute miracle! It was like an elephant finally got up off my chest and I was able to breathe...and yes finally fall asleep. Of course it was now 5am for me and I had to work at the convention. So after peeling my eyes open at 8am, and buying the largest cup of coffee I could find I set off to the exhibit hall. For those of you who saw me, my sincere apologies. I was a mess!

But I do believe that all things work together for the good. I have been telling my husband for a couple of years now that we needed a back up plan, just in case Brock needed treatment and I was not there....So unfortunately he got on the job training! Brad actually did it under stress and pressure only to see that he could actually give a factor dose. I do not recommend this method however do think about an alternate plan for those unexpected times when you hope nothing will happen and it does. Practice without the stress is probably the better way to go.

Have a great day!

GOOD MORNING

IT HAS BEEN GREAT VISITING WITH ALL YOU MOMS OUT THERE.

It is Saturday, the last day of the NHF meeting here in Orlando, Florida.

As we move on to our final day, new friends will be made, old friends reunite, all with one thing in common... to be part of a caring community.

Hemophilia moms will always be here for each other.

Have a safe trip home and stay intouch. We are looking forward to blogging days with you all.

Rhonda and Jenny

thanks for coming to brunch

About 40 ladies attended our brunch, this morning a good time was had by all. Many moms had a chance to meet, chat and enchange stories, hopes and dreams. We were all encouraged and are looking forward to connecting and networking with new moms as well as experienced moms! Grandmoms were welcomed and encouraged to participate as well as pass their expertise, knowledge and their loving touch! Again thank you so much!

We are looking forward to seeing you at Sea World tonite as we "Dine with the Penguins"

It's almost time, meet us for our Mom's Brunch at 11:00 am this morning.

Meet us in the East Tower, Floor 11, Room 90.

Meet the Hemophilia Mom's, and Mom's from across the country -

share in what we believe is, and will become, one the greatest venues in which Mom's can talk to Mom's anywhere in the world, sharing thoughts and feelings, seeking advice, and just plain being connected to others who walk your path in life.

Later!

HemoMom2

Greetings From NHF Orlando, Florida

Ahoy from Orlando. The Hemophilia Moms team has arrived at the National Hemophilia Foundation's National Convention! We were greeted first with a rain shower then it cleared to beautiful Florida sunshine.

We are here to serve you, help you, inform you and support you in any way that we can. Please come by and see us at the CLS Behring booth #201! We are having a Mom's Brunch tomorrow morning in our hospitality suite from 11:00am to 12:30pm. Come join us as you "Navigate Your Journey."

Greetings from New York

Sending my best to all Mom's within the bleeding disorders community. I hope that this blog site provides you with a sense of unity as you communicate with Mom's from across the country. Helping others, helping yourself.

I would like to say hi to all you moms out there, Hi.
I am looking forward to visiting with all of you.